Third Time's a Charm??

Last Sunday morning (August 17th) I set my alarm and got up like any other typical Sunday morning and began getting dressed for church.  I had just stepped out of the shower and sat down to start my make up when I heard my phone ringing on my night stand in the bedroom.  It was 8:08 a.m. and I couldn't imagine who would be calling me that early.  Matthew and Kyndall were still asleep.  As soon as I saw "BLOCKED CALL" on my cell phone's caller ID I knew exactly who was calling me.  

It was Molly (again) from liver transplant.  She said "I have some good news--we have an offer for a liver and we would like you to come on in as fast as you can."  She told me not to eat or drink anything and to just get to Vanderbilt as fast as safely possible.  Matthew must have recognized the fear in my voice as I responded to Molly because he quickly sat up in the bed and started listening closely.  Unlike last time this happened, when I hung up the phone I didn't freak out and start crying.  I calmly told Matthew what was going on and asked him to start loading our bags (which have been packed since February) into the car.  

Our "on call" person for Kyndall was out of town so I quickly went to Plan B and started calling them to see if they could come get Kyndall.  After several attempts with no answer I began to get nervous, not knowing what we were going to do about child care.  Thankfully, within a few minutes she called us back and said she would be right over.  In the meantime I made a quick call to my parents and Matthew called his as well.  We told them to STAY PUT for the time being and that we would be in touch as the day went on.  I didn't want any of them to get on the road and begin the 10-12 hour trip until we were more sure about what the outcome would be.  

After I got myself dressed I went into Kyndall's room and woke her up.  I contemplated leaving her asleep and just slipping out but my heart just didn't feel right about that.  She's very aware of what's going on with my health and I didn't want her to feel like we just left her without explaining things to her.  Plus, I just needed to see her and say goodbye.

I went into her room and began waking her up.  She growled at me as she usually does (she's like her Mama---NOT a morning person at all!) and rolled back over and continued to sleep.  I whispered in her ear "I have to tell you something very important".  She perked up and rolled over when I said that.  I told her that the doctor had just called and it was time for Mommy to go to the hospital and have my belly cut and get my new liver.  This may sound harsh, but we've been very open with her about what's to come.  She's so smart and asks so many questions that it's been impossible to brush over it.  Anyway, when I told her what was about to happen her eyes lit up, she got a big smile on her face and exclaimed "And then we can go to DISNEY WORLD!!"  That's when I lost it.  I was crying and smiling and laughing all at the same time.  She's been begging us to take her to Disney for almost a year now and we have been promising her that as soon as Mommy gets her new liver that will be the FIRST thing on our agenda.  So, she automatically associated a new liver with a trip to Disney and that was the first thing to pop into her sweet little mind.  I said "yes, you're right---we will be going to Disney World very soon!"  She saw that I was crying and said "Pinkie Pie, why are you crying?  Ponies don't cry."  (She's calls herself Rainbow Dash and calls me Pinkie Pie---weird, I know but the My Little Ponies are her thing lately) I told her that I was just a little bit nervous and that I didn't want them to cut my belly.  Without missing a beat she confidently said "But Pinkie, they're going to make you sleep and you won't even feel it!"  (Obviously she's been fed this line before and was preaching it back to ME!)  I said "you're right"and kissed her and gave her a hug.  

About that time our help arrived and I quickly gave her a few instructions before rushing out the door.  Just like last time, leaving Kyndall was by far the hardest part.  I did much better this time though with everything else.  There were a few things around the house that were bugging me (wet clothes in the washer---AGAIN, not to mention that our kitchen was right in the middle of a remodel and things were a disastrous state to say the least.)  All very petty I know.  I was able to let those things go this time rather than wasting precious moments trying to get them in order like I did the last time this happened.  

The weather was AWFUL that morning and we got into some horrible rain and wind.  Matthew drove like a mad man and honestly I was a little scared for my life a few times.  We made it to Vanderbilt in record time and did much better than we did a few months ago when we got a call as far as getting out of Jackson faster.  From the time we got the call to the time I walked into the hospital it was about 2.5 hours.  

Matthew dropped me off at the front door and I went running inside as fast as I could while he went and parked the car.  I was out of breath and just emotionally on edge when I arrived at the registration desk so naturally I threw myself onto the counter and just started sobbing to the sweet lady who was sitting there.  Somehow through my sobs she understood me to say that I had been called in for transplant and that I needed to know where to go.  She actually got out of her seat, came around the desk and gave me a big hug and told me how happy she was for me.  She pointed me in the right direction and I ran off to the next person I was to check in with.  When I got to her, I did the exact same thing!  Uggh.  This time there were other people around who witnessed my dramatic antics and caught onto what was going on.  Two of the sweetest ladies who were sitting in the waiting room got up and came over and hugged me and told me they would start praying for me immediately.  Well of course that just made me cry even more.  What a mess.

I got checked in at central registration and about that time Matthew came running in.  They sent us up to the 7th floor of the critical care tower where I was put into a hospital room and told to change into a gown.  Right away they began taking my vitals and hooking me up to an IV with fluids.  They had a tech come in and take an EKG of my heart which came back fine.  Next they sent me down to radiology for a chest x-ray which also came back unremarkable.  The final step was to have me shower and scrub my skin with a surgical prep soap.  Once all of that was done I got settled in my hospital bed and just began waiting.......and waiting.......and waiting.  I really will never understand why they have you rush around to get to the hospital only to have you sit and do nothing for hours on end.  By this time it was getting close to lunch time and my family was still waiting to hear whether they should come or stay where they were.  I think that was the most stressful part for me.  I didn't want them to get on the road and start traveling until we knew if the surgery was a go, but at the same time I felt like they were wasting precious time and could be making their way to Nashville.

Finally, two of the surgery residents came in to talk to me.  They told me that the donor was young and they felt very confident that this would be an ideal organ for me because on paper everything looked very promising about the state of the organ and the health of the donor.  They said they were about 90 to 95% sure this was going to happen.  After hearing that I told Matthew to go ahead and call our parents and tell them to get on the road.  It seemed like this was really going to be my day.

The residents went over the entire process with me again, explaining every detail of what was to come.  They told me that most transplant patients are in surgery for an average of 4 hours but that mine would likely be longer due to all of the scar tissue they would encounter from my multiple abdominal surgeries.  They explained that when I woke up from surgery I would be on a ventilator and would have several tubes and lines coming out of my body, including a few coming straight out of my neck.  These are details I already knew but probably could have been spared from hearing yet again.  They lifted up my shirt and showed me exactly where they would cut and how big my incision would be.  I would wake up with staples holding my belly together and drains coming out of my side to release the extra fluid.  Again, total sensory overload!

After they explained everything in detail, they had me sign my life away with a big stack of paperwork.  I had to give permission for them to do everything from give me blood products in a state of emergency (blood transfusion) to whether or not to keep me alive if I am ever put on life support.  It was a bit overwhelming and a little too real.  

Once all of that was done I just sat back and tried to relax.  My phone was absolutely exploding with texts, calls and Facebook messages.  I did my best to read and respond to all of them but it was a nearly impossible task.  I was overwhelmed as I scrolled my Facebook newsfeed and saw that many of my friends had changed their pictures back to my pink and green monogram, just as they did earlier this year when I was in ICU and also last summer when I had my abdominal surgery.  Seeing all of that pink and green made my heart smile so big because it was a simple way for so many people to show their support and I certainly felt the love.  I had a million things running through my mind---everything from upcoming plans that needed to be cancelled to things I needed to make sure were taken care of around the house and who can forget Kyndall's first day of school??  One of my biggest dilemmas was what to do about Kyndall's birthday party.  The invitations had just gone out on Friday and I knew people would be receiving them the next morning.  Maybe it sounds crazy that I was even concerned with such things but that's just my personality and I felt out of control not having all of my thoughts on paper so that I could pass it off to someone and have them take care of it.  I knew that in a few hours these things would be far from my mind and all of my energy would be devoted to resting and healing.  So I took advantage of all that wait time by making to-do lists.

Naturally, by this point I was starving yet had been forbidden from eating or drinking anything, including ice chips.  Poor Matthew was about to pass out from hunger pains so I sent him down to the cafeteria to grab himself a burger.  He felt so guilty eating when he knew I couldn't, but there was no sense in both of us being hungry.  

Around mid-afternoon the surgeon let me know that he was getting ready to board the jet and head to harvest the organ from the donor.  My first thought was "you're JUST now leaving??"  Again, I will never understand why they have you rush rush rush to get there only to find out that the doctor did not even leave until 5 or 6 hours after I arrived.  They couldn't tell me where they were going or any details about the donor, except that it was a young person.  This really ate at me and I found myself wondering about this person and his/her family for much of the afternoon.  As always, it's a strange twist of emotions for me.  On one hand I'm rejoicing that I'm finally about to get my second chance at life but at the same time I feel incredibly guilty knowing there's a family out there somewhere experiencing unimaginable grief.  To make it worse, the thoughts of this being a child or a teenager or even a young mother like myself just made me even more sad.

I was told that based on when the surgeons left from Nashville, surgery would probably begin in the early evening and would likely last until just after midnight.  So, I still had several hours of waiting.  I knew my parents wouldn't make it in time to say goodbye to me but I had come to terms with that and knew that by the time I woke up in recovery they would be there next to me.

I was so thankful to hear that Kyndall was having a great time and that she wasn't sad or worried or even the least bit concerned about what was going on.  Just look at these pictures that were sent to me---she was having a blast on her Sunday afternoon!

While Matthew and I we were waiting we had a nice visit from our Sunday School teachers Mr. Johnny and Mrs. Pam Burleson.  They came and stayed with us a while and then prayed over me which meant the world to me and Matthew.  So thankful for friends who are more like family to us!

I can't remember exactly what time, but at some point they sent word that there was a delay and that my surgery was being bumped and would not even begin until 5:00 a.m. This was actually good news because it meant that my family would arrive in time to see me before I was taken back.  I was so thankful for this!  Another bit of happy news came when the doctors released me to eat up until 9:00 p.m.  After being so hungry all day this was music to my ears!  I only had about two hours so I quickly sent Matthew down to grab me some dinner and of course and Icee.  (Yes, the Starbucks in the hospital has an Icee machine!)  He came back with the best looking hospital cheeseburger I've ever laid eyes on but sadly no Icee.  Apparently on Sundays the coffee shop that serves them closes early.  Such a bummer but I was still as happy as a pig in mud to have food in front of me!!

The "last supper" for this old worn out liver!

After I ate I waited......and waited some more.  I had a chance to talk to Kyndall and also to my friend Glory, both of which made me so happy and really calmed my nerves.  Kyndall was excited to tell me all about her day and about how much fun she had swimming and jumping off the diving board.  Glory just always knows the right things to say and it was good just to hear her voice one last time.  Maybe it's because she's a nurse or maybe it's just because she's my best friend  but she always knows how to get my head back on straight.

I also started talking to the girl and her Mom who were next to us in the room.  We were both there for transplant, she for kidneys and me for a liver of course.  She was younger than me, just 24 years old.  She had been very sick for a long time and had been waiting FOUR YEARS for her transplant.  As we began talking about our doctors and what we had been told, we realized that it was very likely that we would be receiving organs from the same "young" donor.  She told me that her surgeon had just boarded the jet a few hours prior to go harvest the kidneys and of course so had mine.  Maybe we were mistaken, but we were almost positive based on several details that we were receiving from the same donor.  That was really neat to think about!

Everything was going well.  My belly was full, I was comfortable and even a little bit sleepy despite being pretty on edge.  The nurse was just about to get me some Benadryl to help me rest when she came back into my room and handed me a phone.  "Your surgeon wants to speak with you", she said with a very monotone voice.  I figured this could NOT be a good thing.  He said "Mrs. Hughes I have some good news and some bad news.  I'm going to start with the bad news.  The bad news is we've just seen the organ and it's not suitable for you.  It's not healthy enough for what we want you to have and we don't feel it would be in your best interest to go through with this transplant.  You will be discharged shortly and can return home to life as usual.  I'm so sorry."  He then said "The good news is we're going to continue looking s hard as we can for the perfect liver for you.  We want you to have the best of the best and we are committed to finding that for you."  My mind just kind of went into a fog after that.  I remember him apologizing over and over again and saying how very sorry he was.  I told him I understood and that I was glad they were looking out for my best interest.  I didn't cry but I certainly wasn't happy about the news.  I had really psyched myself up and allowed myself (and everyone else) to believe this was really going to finally happen.  I felt more upset about having to deliver the news to my family than anything else.  I knew they had to be getting close to Nashville by this point.  I immediately called my Mom and gave her the update.  She thought I was joking.  She really thought I was trying to be funny and it took me several minutes to convince her otherwise.  They were only about 30 minutes from the hospital at this point and my in-laws were almost to Jackson to retrieve Kyndall.  Frustrated doesn't even begin to describe how I was feeling and though they never showed it, I'm sure they were all feeling the same way.

The nurse came in and unhooked my monitors, took out my IV and gave me my clothes back.  I walked out of the transplant floor after 12 hours of waiting with nothing to show for it except a hospital bracelet with my name and date of birth.  Just as we were getting on the elevator I looked over and saw this sign and then it all began to make sense to me.

Do you see what it says?  It doesn't say an average life....it says an extraordinary life.  I want to have an extraordinary life and in order to do so I need to be as healthy as possible.  That means I need a liver that's as close to perfect as they come.  I plan to be around at least another 50 years and I need a body that will allow me to do that.  I know that at the right time I will receive what I'm waiting for and I know that it will be worth all of the heartache, frustration and disappointment that lead to it.

I'm a firm believer in God's timing.  There are so many situations in my own life where I am grateful that things didn't turn out the way that I had hoped.  Rather, in His time and in His way they were made perfect and more wonderful that I could ever have imagined.  One of my favorite quotes is "sometimes I thank God for unanswered prayers." I'm sure that down the road I will look back and have that same feeling about this situation.

The ride home was long and tiring and I was mentally and emotionally spent.  Several people wanted me to call them and chat but I respectfully declined because I just didn't want to talk about it anymore.  I just wanted to go home and see my family and put this behind me.  What a day.  I don't think I've ever experienced such a range of emotions in a short period of time as I did that day.  Everything from fear to excitement to sadness to guilt to anger.  I had felt them all.

Somewhere between Nashville and home I cheered up a little, realizing that there were several silver linings to this turn of events.  First of all, I would have all of my extended family under my roof for a few days which is always wonderful.  Second, I would get to spend lots of unexpected time with my brand new four week old nephew who made the trip up with my sister.  Since he was born 6 weeks early and stayed in the NICU, Kyndall had never even laid eyes on him.  I was excited to see her meet her very first cousin.  Also, I no longer had to miss out on all of the fun things that were coming up like a trip to Memphis for the Beth Moore conference, Kyndall's birthday, Kyndall's first day of school, the Color Run 5k race that I signed up for, and many more.

We got home somewhere close to midnight and everyone was exhausted but still hyped up from all of the excitement.  We visited for a while and Kyndall was able to hold baby Wyatt and love on him for the very first time.  (Pictures coming in another post!)  When everyone finally went to bed and the house was quiet I still couldn't turn my mind off.  My thoughts kept going back to the donor and wondering who he/she was and how they died and how guilty I felt that I couldn't use the precious gift they had intended for me.  I'm not entirely sure but I assume (and hope) there was a back up who was able to use the liver.  Perhaps someone a little older who didn't need the longevity of an organ as much as I do.  I also thought about my roommate who was getting the kidney transplant.  I wondered if she had been sent home too or if the kidneys were healthy enough for her to receive.  I guess I finally fell asleep but not before replaying the entire day over and over in my head several times.

We spent the next day (Monday) visiting with the family and celebrating my father-in-law's birthday a little early.  They were supposed to come up and visit over Labor Day weekend but this unexpected (and unnecessary) trip canceled those plans and we will no longer be seeing them again this weekend.  I still feel so bad about telling everyone to come and then having it be for nothing.  Anyway, we enjoyed our time with them and on Tuesday morning my in-laws left and my Dad also rode back with them.  My Mom, sister and baby Wyatt stayed the rest of the week and we loved having them here for such a long time.  I have pictures to share of our time together in an upcoming post.

I touched base with my doctors and my liver team and found out that since being called in last weekend, my labs have actually gotten worse which means I am moving higher up on the priority list.  When I was called in for surgery last Sunday my MELD score was a 22.  My MELD is now a 26 and as of a few days ago I was number 6 on the transplant list for my blood type.  That's pretty good so I am keeping my bags packed and expecting another calls sometime soon.  The frustrating part is that this very same scenario could likely take place yet again......and again.  It just comes with the territory of being on an organ transplant list.  They told me to expect at least two false alarms and I've now received them.  Here's hoping the 3rd time's a charm.

Thank you all for your outpouring of love, support and prayers during those 12 hours last Sunday.  I feel absolutely awful that I got everyone all excited only to find out it was for nothing and honestly I'm a little embarrassed.  I've even thought about keeping it under wraps and not sharing my news the next time I get a call.  The damage control is just so hard to contain with social media these days.  Even three or four days after I was sent home there were still people who believed I'd had my surgery.  I'm not sure what I will do next time....it's something I will just have to think and pray about.  The one thing I do love about what happened is that there were hundreds, possibly thousands of prayers sent up on behalf of a family whom I will never know simply because I shared the news of their loved one's passing.  The donor's family likely has no idea what an army of prayer warriors they had praying over them last Sunday night as they were grieving their loss.  I hope that they felt those prayers and if nothing else good came of this situation, that alone is enough for me.

For now we will just keep patiently waiting and resting in the knowledge that His timing is perfect and His ways are flawless.  I don't know what my future holds but I know who holds my future and that is enough.